Tell Me About your Asperger's Kid

[FortForever]

Originally Posted by Donna M

Really?

FortForever has had a difficult time recently. I haven't read about many people with children who have reached her son's age; many things changed for them.

It's very hurtful and insensitive for anyone to imply she doesn't love her son, life is very trying for them now.

Thank you.

Originally Posted by kandb

Donna,

Yes, I do think everyone has a right to their opinion, but I was just trying to point out that she seemed very angry as did her son that she was describing. Having alot of anger, cannot be good for her or her son. I did not put her down or say she did not love her son. To be honest, I feel very sorry for her. Maybe a good support group or counseling can help. I wish them the best.

What you mistook for anger are actually common actions of people with Aspergers. They often push past people, although I don't know why. Even though that is what comes natural to my son, I taught him to follow society's rules. Now that he is an adult, he does his own thing and ignores what I taught him. Am I annoyed? Yep. Do I hate him? NO Am I angry? NO

When he does this stuff (that I consider rude), he is not angry at all. This is where I am confused because the parents here do not seem to understand the most basic things about Aspergers. They do not act like us. Pushing past someone is not an act of anger in their world, it's normalcy.

Not engaging in conversation is not an act of defiance or anger. Once again, it's just Aspergers being Aspergers. I forced society's rules on him as a child. He KNOWS how to behave properly but has no chosen to say, "screw society, I'm doing things my way." Not saying this is good or bad, but I will say that it gets on my nerves.

I also did not teach my son to hate his disability. He's not stupid. He doesn't have to be taught that, he hates it quite easily on his own. He doesn't dwell on it. Neither do I. I am just reflecting on conversations we have had in the past.

Anyone who knows us in real life would never say the rude things the people on this board have. In my opinion, you have to be a bit on the angry side to attack strangers on the internet for sharing their personal feelings. A bit of projection going on, maybe?

My son does not have the help of any agency, social worker, placement counselor, etc. He got through college and got a job on his own. He has bought his own car, pays his own way, is responsible, kind, and caring. He turned out pretty good with Aspergers considering what a hateful, sucky mother I have been accused of being.

BUT, besides all the wonderful things about my son that I love him and am proud of him for, lurks the part that will drive me nuts at times. It's his Aspergers. It's the part of him I was posting about in my original post. I didn't feel all this background was necessary since the OP only wanted to know about life with Aspergers.

I felt I was in a unique position to offer insight into living with a young adult Aspergers son. I am glad he works as much as he does. When he was home, his quirks were worse. Now that he is busy, he has much less time to concentrate on them. I don't think it's terrible to be thankful for the time we have away from each other everyday. It saves both of our sanity.

When reading through all the new posts, I came across one telling me how I should have worded my statement in order to get the sympathy of the group. I wanted to thank you for your concern, but getting the sympathy of anyone was not my goal. My goal was to share my perspective as the parent of a young adult with Aspergers.

My thoughts and experiences do not requiring editing, as they are my own. They do not apply to anyone else. My feelings about Aspergers, the condition, are my own opinion. I stand by that. I have no bad feelings about the people who suffer with the condition.

Originally Posted by MikeOhio

The posts attacking a mother who simply expressed her views are disgusting and it makes me really question what kind of people you are. This is message board where people are expressing their experiences. There was no personal attacks in her message but yet she has received many personal attacks...disgusting.

Also she is correct that the disease is easier to manage when the person is a child. You can protect them and shelter them. Once they are adults, it is often a cold harsh reality that the outside world will not be as accepting as parents.

Thank you.

[SueM in MN]

First - people need to keep in mind that communication over the Internet with just written words is a lot different than in person, face to face.
Words can be perceived much differently than the person who wrote them intended.
With just words, we are missing all the other social cues that come from being able to hear the 'speakers' tone of voice, facial expressions, body language, touch. People are much quicker to take offense to words read on the Internet than if the same words were said to them in person by the same person. One of the reasons is that lack of social cues, but another big reason is that when writing back and forth, there is not the immediate 'give and take' of verbal communication.
And, there is a lot less ability to clarify or validate that what you heard is what the writer meant to say.

From the standpoint of 'hating' a condition ( and, I am using 'condition' to mean pretty much anything that the majority of people don't have. It could be autism, Asperger's, diabetes, cerebral palsy, Down syndrome, etc.)

Most conditions have 2 extreme groups - people who are very upfront that they consider their condition (or child's condition) to be a big part of their identity and they would not change it even if they could.
In the other side, are the people who hate the condition, but not the person.

The main thing the 2 groups have in common are that neither understands the viewpoint of the other side, because it is so different than their own. There are a lot of people in the middle or who move from feeling to feeling, depending on the effects of their condition at the time.

Extreme words like "hate" "monster" tend to bring out extreme feelings. There is a man who wrote a story called Schyler's Monster about his family's journey with their daughter who has a brain malformation. Most of the things written here are tame compared to comments I have seen written to him on his blog. Even though he writes about his daughter with great love and understanding, people get stuck on the word "monster" and can't get past their own feelings to see what he has written.

SO, WITH KEEPING ALL THAT IN MIND, PLEASE BE KIND TO IN YOUR COMMENTS TO OTHERS.

Originally Posted by sb682

I can't speak from personal experience with Asperger's, but I am very familiar with living with autism (my younger brother is on the other end of the spectrum) and I taught self-contained classes for children with autism for six years. There is no real "poster child" for autism. Each person presents with different symptoms, quirks and abilities/impairments. Your son may have Aspergers/high functioning autism, or he may fall just outside the "spectrum" and just be a little quirky. If he is very close to that end of the spectrum, it's feasible that you might not have noticed any problems. Heck, some people aren't diagnosed with Asperger's until they're adults!

School and home are very different. It's natural for us to make accommodations for our kids without even thinking about it. If kids don't like tags in their shirts, we cut them out; if they don't like their foods touching, we get divided plates; if they don't like surprises, we don't surprise them. We say, "Oh, that's just one of his/her things," and we forget about it. Parents start to notice when they have to make *big* changes, lots of changes, or things just don't seem right.

Schools are different. When you've got 20-30 kids in a classroom that all need to keep up with the others and meet the same objectives at the same pace, it's easy to pick out someone who is "different" and may need some intervention. I'm sure you saw it in the classroom yourself, so you probably know what I mean. Don't beat yourself up if the tests show he has Asperger's and you didn't know it. It means he copes really well if you make some small accommodations for him, which is great news!

I would do my best to go into the evaluation process with an open mind. Maybe they'll find he just needs some accommodations for academics and he'll be fine otherwise. Maybe they'll think he needs more. Just remember: it is *not* anything you did/didn't do, and you do *not* have to agree to what they recommend! You can get a second opinion and you can work together to figure out what will help your son most. They do *not* have the right to develop an IEP and expect you to sign off on it. You have the right to speak your mind and disagree with them if you choose to. I really suggest checking out wrightslaw.com; they provide excellent advice on special education law in easy-to-understand terms. Hopefully, it won't come to that and everything will be just fine.

I just have time for a few more words right now.
I have a niece and nephew who both have Asperger's.
The nephew was considered "weird" from a very early age, but was not diagnosed with Asperger's until he got to about 6th grade. He did have other diagnoses, which did not seem to fit totally, but did explain some of his difficulties. He is still struggling to fi displace as a young adult.

My niece was diagnosed with ADD at a pretty young age, but got a diagnosis of Asperger's as an adult. When she was in a Psychology class in college, she took an Asperger's scale and I still remember the comments from friends and relatives when she posted on Facebook that she had pretty much gotten 100% on the scale. My favorite was "And, this surprises you in some way?"
She has a Bachelors and a Masters degree and a very good job that makes use of her skills.

So, 2 people in the same family at very different places.

I am going to move this to the disABILITIES Community Board at this time since it is not about WDW and will fit better there.

[jodifla]

Originally Posted by tink2013

To start, I am posting this under a new screen name, to protect my little man while he undergoes a possible Asperger's diagnosis process.

My 8 year old DS is in the process of being assessed by our school district for dyslexia or another learning disability. During the assessment process, the school psychologist noticed some behaviors in him, like a lack of eye contact, and decided to have us fill out an Asperger's scale. She had his teacher fill one out, too. I'm not sure who else was asked to fill one out. The team met yesterday to go over his results, and the school psychologist called me today to set up a meeting to go over the results next week. I've been waiting for several weeks for the Asperger's results, and even longer for the academic results, so I asked her if she could tell me a little bit now. She said that they believe that he does present with Asperger's.

I am a certified teacher (although I stay home now) with a Master's degree in teaching, so I'm a little more aware of Asperger's symptoms than a normal parent would be, although I am in no way an expert.

I know my son is a bit "quirky"-- he's a bit socially awkward, doesn't make friends easily (although he does have one or two good friends), has trouble with eye contact, and talks a lot about his Minecraft video game. Academically: He's had trouble learning to read. He's been in speech therapy since he was 18 months old (first for a lack of words, then for articulation, and now for fluency and grammar). His handwriting is terrible. He reverses letters and numbers and transposes consonant digraphs and s-blends as well as two-digit numbers.

BUT, he has a pretty well-developed sense of humor (he makes jokes all the time, and they are actually funny). He likes a schedule, but does not freak out or stress out if the schedule is changed. His behavior in school is near perfect (they use a color system-- blue, then green, then yellow, then red)-- He is in second grade and has only gotten on green once in kindergarten b/c he forgot to write his name on his paper. He is affectionate with those he knows well. We have not noticed any sort of stemming actions from him.

Anyhow, I'd like to hear from others who have children diagnosed with Asperger's. What is your child like? How severe are the symptoms? Do they interfere with your child's behavior at school? I could be in complete denial, but I think that while DS may have some Asperger's-like tendencies, that they are not pronounced enough to label him with Asperger's. I am probably going to take him to a developmental pediatrician to get a medical opinion about it. Any input would be greatly appreciated.

OP, please be sure to get a second opinion by a developmental pediatrician who is skilled in DIFFERENTIAL DIAGNOSIS.

DO NOT trust a school psychologist. I've not met one yet that knew what they are doing! I'm sure there are a few out there, but these school psychs typically have little training in actual diagnosing. And they have NO accountability.

What the school is giving you is just a educational label, NOT a diagnosis.

[bookwormde]

I agree a clinical diagnosis is always worthwhile, although on average clinicians are no more competent in this area than school psychologists. Having worked with many families my experience is that when a school psychologist actually makes a call of ASD/Aspergers it is correct in a very high percentage of cases (at least 95+%), when the verification is done by a highly qualified clinical team specializing in ASD/Aspergers.

Good news is that within 2 years we should have a partial but reliable genetic scan available, so it will no longer be a question of if our kids have ASD genetics, but more importantly we can focus on the impact it has on them.

[dmiller64152]

My school did a functional evaluation rather than a clinical diagnosis, and made a determination of areas where he needed support. The school did not label my son with anything; in fact, a comprehensive psychological evaluation deemed my son with ASD, but he did not fit the educational standard for being autistic/Aspergers. But it's ironic that I had to get the psychiatric evaluation before the school would grant the iep. Point being, what your child needs from an educational perspective may be vastly different from what he needs in terms of personal skills, counseling and even meds. It is imperative that the parent deal with those issues that are not within the school's purview.

[NotUrsula]

I'll contribute, fwiw. My Aspergian son is not quite 16.

There are times when he frustrates me so much that I want to pull my hair out, or even slap him, but then, I hear that from the parents of neurotypical kids as well; teens being teens, they tend to be trying on adult nerves.

I'll state it up front: I am not a curebie. Do I wish that DS wasn't Aspergian? Sure, sometimes, particularly when he is being judgmental and refusing to see shades of grey. Am I looking for a cure? No, and I say that for one particular reason: I don't see Asperger's syndrome as a disease.

To me, Asperger's is simply a difference, albeit a large one. I guess that I look at Asperger's much the same way as I look at being left-handed or being gay. Once upon a time, either one of those things got you branded as not normal; as fatally flawed in society's eyes. My left-handed MIL got her knuckles rapped regularly for writing with her left hand, and was forced to use her right because it was "normal". Today we think nothing of left-handedness. The time is on the horizon when society as a whole will think there is nothing "off" about being gay, either; it just won't matter any more, and IMO, anyway, that is as it should be.

There once was a time when being "quirky" meant that people might have laughed at you or preferred not to socialize with you, but back then no one thought of those people as victims of a disease. Oddity and a lack of conventional manners was just accepted as one of those things, and the expectation was that people like that would find their niche somewhere and manage just fine in it. Asperger in some ways did these folks no favors; now some people treat that quirkiness as a disease. All evidence to the contrary, whenever the idea of disease is raised, with it comes the idea of contagion, and the segregation begins.

I don't think that my son's brain needs to be "fixed" -- he just needs guidance to learn certain things that happen to come without effort to other people. Other people can't see 400 turns of a maze in one glance, but he can -- does that make those other people a victim of something? He is bright, he can learn, and he has, but someone has to recognize what he doesn't know and help him to understand that these things have to be taken seriously if he is going to be a self-sufficient adult, even if it means learning to fake it. Some people need extra help to learn math -- my DS needs extra help to learn manners.

Is it infuriating sometimes to have to be that person who helps him understand? Oh, you bet, but part of me also wants to ask why it's so gosh-darned important that he say "excuse me" to every single person he brushes into as he works his way free of a crowd? Why do all those people have a right to get angry at or look down on someone who really has not done them any harm? Is if really that big a deal if he doesn't always say Thank You or Please? (FTR, at 15 DS now always says Please and Thank You at school or when dealing with businesses or doctors, etc. However, he does not say it at home with family; he knows we won't hold that against him.)

I don't like people who feel that parents should never voice frustration with the things that their kids do or don't do that makes their lives particularly difficult. We are parents, sure, but we are also human beings, and human beings get angry and frustrated, and sometimes the intensity of that can even trump love for a little while. IMO, it's OK to not like your kids sometimes.